The beat of March: steps forward, steps back

March started with Kevin being more settled, with lessened agitation, increased appetite and tolerating regular therapeutic massage. Phew!! Even showering became a lot more tolerable, with Kev controlling the taps himself. At the same time, his stomach became more settled, a big relief!

He was using his gutter frame for walking, lifting his right foot well (a huge improvement from the very little movement in his right side 3 months ago), and continued to enjoy outings in the car. Kev being Kev, he continues to love anything mechanical and changes the gears in the ute with precision.

I went out for 2 hours one evening and the girls stayed at home with Kevin and had friends over. Kev forfeited his usual early bedtime – it became apparent that he wanted to stay up to keep an eye on his “girlies”. Dads continue to watch out for their daughters (not to mention their baby granddaughters!) when there are lads around, even when the dads have TBI! Good on you Kev!!

However, I have found that leaving him too frequently leads to increased anxiety and agitation and decided that I need to try to organise regular times and days for outings. Before that can happen though, we have to face the ongoing hassle of trying to get the wheels in motion for support for Kev.

So the month started off on a positive note, but unfortunately, after a week of being relatively settled, the anxiety and agitation returned. Kev started to slip into what I suspect strongly is that big black hole of depression. Smiling has become a thing of the past.

We had to restart using his PEG tube for meals, as he wasn’t eating so well again. At the same time he started sleeping for very extended periods, up to 20 hours daily. I find the lack of guidance from the medical professionals very unsettling and I feel very unsure of myself. But on a positive note, overall Kev's reactions show a higher awareness of what is going on – with no ‘appreciation’ of his situation, he would not be in this state. So, as we continue the journey, this development is not unexpected; what is unexpected is the unavailability of antidepressants.

In the third week of March Kevin had his first-ever(!) appointment with a neurologist, more than 9 months after his injury. Kev was very cooperative with the consultant, who was kind, patient, helpful and informative. To quote him, "The road ahead will be full of peaks and troughs and this is normal. Make the best of every day and seize the good things and put the difficult times down to the injury, NOT the person." I organised this one-off appointment with this particular doctor so that Kev can have ongoing care with a physician in Bunbury.

Despite the problematic aspects, Kev continued to cooperate with walking, at times initiating it himself, even with the difficulties in walking due to his foot drop. When friends were over one evening, Kev was impatient with waiting for me to assist him into bed – I found him standing beside the bed attempting to get in! He was found another day attempting to open Tahli’s door and was standing (bent over) holding onto the door, to get out onto the patio.

He continues to enjoy riding in the car, to the point that he will make a beeline to get to it as soon as no one is looking. One evening, I did a double-take when I saw him through the front window, attempting to climb into the car. Not only had he pulled himself up and opened the 2 metre-high gate and undone the ‘dementia proof’ lock on it, he had negotiated around the gate (the gate opening towards him), got to the ute and opened the door, and then manoeuvred his chair into the right position to transfer inside. I whizzed out in time to avoid injury and assist him as he climbed into the ute frontways with his left foot on the inside of the cab, hauling himself in.

At the end of the month Kev started to show more great developments. He wheeled himself to our room and when I went to assist him into bed, much to my amazement he was lying back there on the pillows! He had done a complete transfer to the bed independently from the chair (the monkey bar is of great assistance), then pulled his legs onto the bed and got the pillows sorted! Later in the day he pointed and jargoned for his bed. I suggested to Kev that if he wanted to go there perhaps he could crawl across. With no hesitation he manoeuvred from the chair to the floor independently in an extremely co-ordinated fashion. Then he promptly crawled the 6 m to the bed, without stopping!! All of this with no help or coaxing!! He needed very minimal assistance to get into bed, again using the monkey bar with both right and left hands, at times together, at times one hand at a time. Another huge step forward was Kevin doing his shoelaces up by himself!

Some other goodies in March:

• When Bren asked for Kev’s opinion of her artwork, he gave her a big thumbs up.
• Fussed over Rubie; they often had their arvo nap together.
• Jean, Kev’s mum, has helped out with some of Kev’s daily needs – these kindnesses go such a long way.
• Kevin seems to respond well to having his brother Pete around – he is cooperative and seems encouraged by Pete’s presence. Thanks Pete for the help you’ve given on trips to Perth and when you visit!
• Kev’s sister Sharon continues to be a calm influence, visiting weekly. Thanks Sharon for all your visits and the time you have taken to massage Kevin.
• Our old friends Albert and Sharon have continued to be tremendous supports. I can’t thank you two enough for all that you have done…
• Marian has become a much-appreciated visitor. Thanks Marian for all your hard work and efforts on our behalf!
• Ethel and Neville have dropped around on at least a couple of occasions and done a wonderful job in the garden to spruce it up. This is such a huge help and really helps us to feel that things aren’t totally out of control.
• Thanks too to Debbie, our bookkeeper, who found a stable table for Kev – I'd been looking everywhere for one, as it is loads better than balancing a pillow with a plate on top of it.
• The South West Times ran a full front-page article on Kevin, leading to two phone calls from two businessmen wanting to help and another from a lovely woman the girls know from riding club. Offers of help from strangers wanting to give their time is overwhelming.
• The big news of the month was Kev’s application for CAPS funding being accepted! In theory this is great, but in practice it is not easy to find reliable people who want the hard job of helping someone with needs as great as Kevin’s. On top of this, 15–30% of the funding gets taken off for ‘administration’, i.e. fees for the service provider that organises the staff! The funding was meant to be available from the 1st of March, but it could all take weeks to organise. The awarded sum looks good on paper, but… Watch this space!

Looking back over the month, it is clear that there have been good days as well as bad. It is all so hard at times, but people like our old friends John and Irene and our ‘guardians’ Graham and Janet continue to lend support that keeps us going. Looking back on the bad days and reading my diary, I can see the funny side of some of the situations I have found myself in, including running near-naked through the house trying to stop Kev rushing off at great speed, only to be caught out by some visitor or other, expected or otherwise. Dignity? What’s that??